One shoe-two shoe-red shoe-blue shoe
“We delight in the beauty of the butterfly, but rarely admit the changes it has gone through to achieve that beauty”
I prepared myself for the brace as I have with everything else — we will figure it out as it comes. Casting was mostly a breeze, so I (naively) expected the AFO brace to be the same. Turns out the AFO brace is just a different animal, & I was ill-equipped.
In the past, planning too far ahead and anticipating different outcomes for many of the unknowns has become anxiety-inducing for me. So, I have tried to stop. I have taken more of a 'go with the flow' mentality, knowing that we have an amazing team of doctors who have our back and whom I deeply trust.
I literally showed up for the cast removal/brace appointment with no extra socks, no extra shoes, and nothing but what I regularly have with me when I go places with Elliott — lots of snacks.
I didn't know how big the brace would be on his foot, so I couldn't buy shoes in advance. I didn't know I needed long socks that would reach all the way up his calf, so I didn't buy the right socks ahead of time. I didn't know about hot spots and blisters, so I didn't realize how constant an eye I would need to keep on his foot and ankle. Simply put, I didn't know the right questions to ask in advance, so I wasn't prepared for what was to come.
The cast removal/brace appointment resulted in me crying in the car afterward, realizing that this process would be much more than I anticipated & I had absolutely no clue where to start. I knew that finding shoes was a priority and would be hard with only one brace, but I did not realize how huge a hurdle it would be to figure out what would work for both feet.
A mom friend added me to a private Facebook group called "Mild Cerebral Palsy Parent Support Group," and I frantically started searching for posts and advice on shoes for kids with just one AFO brace. I took to the suggestions I found in this group and ordered multiple pairs of shoes from Billy Footwear, Zappos, and Amazon. I spent over $300 on shoes in different shapes, sizes, styles, and colors.
While we waited for the shoes to arrive, Elliott was using a cast shoe with zero support for his brace foot and a tennis shoe for his other foot. He was mismatched for weeks as we tried different brands and styles that would be both comfortable and functional.
I watched the gait of his walk shift and change as he adapted to the brace, but I also worried myself sick that the lack of support from his mismatched footwear was making it worse. I felt like I was striking out with each new purchase, time and time again.
The sizes were wrong, the non-brace shoe was so big there was no amount of stuffing or adjusting I could do to make him trip less over the toe, the material was too thin and would break apart from the brace metal rubbing up against it in no time, the brace wouldn't fit in a size that should have been big enough, etc. etc. etc. Truly it felt like a never ending hamster wheel that I just couldn't get off of.
I ended up returning all the shoes but one pair, and once I found the right pair, I honestly felt like I could breathe again. BILLY Footwear has been our biggest lifesaver. It took some trial and error, but once we figured it out, I have a baseline I can work from, and that makes all the difference in the world. I connected with the company because I love why Billy founded it and the dream behind his vision. They will sell two different-sized shoes without having to pay for two pairs!! I will gladly keep supporting this company and hope to pass them along to others who find themself in a similar situation.
The last five weeks have been hard. There have been a lot of unexpected doctor's appointments, a lot of differing opinions, and A LOT of unplanned logistical nightmares. There have been plenty of re-processing emotions that I felt like I had worked through last fall. I have gone from overwhelming confusion, anger, sadness, and stress, back to hope, joy, acceptance, and peace of mind. Thus, the rollercoaster of a CP diagnosis.
For the most part, Elliott has taken to the brace just as he did the cast. Very little complaining, and fairly unbothered by it all, like the true warrior that he is. Now that we have the shoes figured out and his skin has adapted to the brace, we are rocking and rolling. He is walking great, he loves his red brace, and doctors are continually giving him rave reviews at how strong his leg is becoming and how quickly and well he is adapting.
I know there will be more hurdles with whatever life brings, but I also know that right now we are finally in a good place, and I am so, so grateful to have made it to this point.
